Re: contacting Children's Hosp. Boston???

[Guest guest]

If your looking to see a specialist at CH Boston. You would want to

contact the Plastic Surgery Department. You can request to see Dr.

. We saw him a few weeks back for my DS and he is

wonderful. He is highly knowledgable on Plagio and Tort. I believe

the majority of his practice deals in this field. I will tell you it

took us two months to get into to see him. I realized why when we

had our appointment. His waiting room was full of babies with

different stages of Plagio. Also his staff is extremly kind.

He did not recommend a band for DS because he was considered

slight/mild. Off 2mm side to side and and about 2mm back height. (I

know Im not saying this right but thats how I understood it). He

suggested to keep repo until DS is completely sitting up all day and

sleeping on his tummy/side. He didn't think it would get any worse

at this point but if we thought it was to come back to see him.

I was very impressed with his knowledge and manner. He answered my

list of questions and even went on to tell us about a paper he is

writing for Harvard Medical School on the subject.

Good luck. If you thinking of making an appointment, I wouldn't

hesitate because you may have to wait some time before your

appointment.

KAT

PS - just realized I have his office number on a post-it on my desk.

617-355-8509

> > > > Hi, as a new member to the Torticollis group, I was

lead

> to

> > > > this group...

> > > > Anyone out there have any suggestions for positioning for

> > nighttime

> > > > sleeping? Jack is not yet rolling over, but is smart enough

to

> > move

> > > > away from all the positioning ideas I've come up with to keep

> his

> > > > head facing midline or towards his left shoulder. He finds

his

> > way

> > > > to the comfort zone and looks right much of the night. His

> > plagio

> > > > has definetly worsened over the past two months since his

> > torticollis

> > > > diagnosis. He does not have any facial asymetry, but I am

> afraid

> > > > with time he will develop this.

> > > > HELP. I want to try EVERYTHING before we discuss a helmet.

> His

> > four

> > > > month checkup is next week and I will be asking for a

referral

> to

> > > > the plagioclinic at Children's Hospital in Boston to get

there

> > > > feedback.

> > > > Please, any ideas are appreciated.

> > > > Thank you

> > > >

> > > > le, Mother of Jack 4months with Right Torticollis and

> > > > associated Right Positional Plagiocephaly

[Guest guest]

le, I would contact the office of the referring dr's office.

I'm not sure about that particular clinic, but the ped's office I

take my daughter to has a girl that all she does is referrals. She

was able to give me the name and number of the place she was

referring us to. She asked me in the beginning if where she was

going to send me was ok or if I wanted to go somewhere else. I

decided that where they were going to send me was ok. What I'm

getting at here is, call the ped's office tell them your going to

request a referral and to where, she if they have a Dr's name and

number you can call to get the ball rolling. Good Luck, keep us

updated on your progress.

Dustie

> > > > Hi, as a new member to the Torticollis group, I was

lead

> to

> > > > this group...

> > > > Anyone out there have any suggestions for positioning for

> > nighttime

> > > > sleeping? Jack is not yet rolling over, but is smart enough

to

> > move

> > > > away from all the positioning ideas I've come up with to

keep

> his

> > > > head facing midline or towards his left shoulder. He finds

his

> > way

> > > > to the comfort zone and looks right much of the night. His

> > plagio

> > > > has definetly worsened over the past two months since his

> > torticollis

> > > > diagnosis. He does not have any facial asymetry, but I am

> afraid

> > > > with time he will develop this.

> > > > HELP. I want to try EVERYTHING before we discuss a helmet.

> His

> > four

> > > > month checkup is next week and I will be asking for a

referral

> to

> > > > the plagioclinic at Children's Hospital in Boston to get

there

> > > > feedback.

> > > > Please, any ideas are appreciated.

> > > > Thank you

> > > >

> > > > le, Mother of Jack 4months with Right Torticollis and

> > > > associated Right Positional Plagiocephaly

[Guest guest]

Hi le,

I also used Chilren's hospital in Boston. We saw Dr. Madsen and

were lucky to get our appt within two weeks. It is the neurosurgery

clinic. We also saw Dr. once in followup (in place of Dr.

Proctor who was in surgery). I've also heard great things about Dr.

there who I believe is craniofacial, but I've heard he has a

longer wait to get an appt. I probably do have the phone numbers,

but I'm at work now. If you dont' have any luck let me know. I

know the hospital has a website that probably has the info you

need. We went when Hannah was about 3.5 mos to see Dr. Madsen and

did a consult at NOPCO (the orthotic place at Children's) the same

day. Good luck with everything. Hannah would have been " Jack " if

she were a boy .

, mom to Hannah, DOCgrad

Cape Cod, Ma

> > > > Hi, as a new member to the Torticollis group, I was

lead

> to

> > > > this group...

> > > > Anyone out there have any suggestions for positioning for

> > nighttime

> > > > sleeping? Jack is not yet rolling over, but is smart enough

to

> > move

> > > > away from all the positioning ideas I've come up with to

keep

> his

> > > > head facing midline or towards his left shoulder. He finds

his

> > way

> > > > to the comfort zone and looks right much of the night. His

> > plagio

> > > > has definetly worsened over the past two months since his

> > torticollis

> > > > diagnosis. He does not have any facial asymetry, but I am

> afraid

> > > > with time he will develop this.

> > > > HELP. I want to try EVERYTHING before we discuss a helmet.

> His

> > four

> > > > month checkup is next week and I will be asking for a

referral

> to

> > > > the plagioclinic at Children's Hospital in Boston to get

there

> > > > feedback.

> > > > Please, any ideas are appreciated.

> > > > Thank you

> > > >

> > > > le, Mother of Jack 4months with Right Torticollis and

> > > > associated Right Positional Plagiocephaly

[Guest guest]

le,

Please let us know how you make out.

> > > > Hi, as a new member to the Torticollis group, I was

lead

> to

> > > > this group...

> > > > Anyone out there have any suggestions for positioning for

> > nighttime

> > > > sleeping? Jack is not yet rolling over, but is smart enough

to

> > move

> > > > away from all the positioning ideas I've come up with to keep

> his

> > > > head facing midline or towards his left shoulder. He finds

his

> > way

> > > > to the comfort zone and looks right much of the night. His

> > plagio

> > > > has definetly worsened over the past two months since his

> > torticollis

> > > > diagnosis. He does not have any facial asymetry, but I am

> afraid

> > > > with time he will develop this.

> > > > HELP. I want to try EVERYTHING before we discuss a helmet.

> His

> > four

> > > > month checkup is next week and I will be asking for a

referral

> to

> > > > the plagioclinic at Children's Hospital in Boston to get

there

> > > > feedback.

> > > > Please, any ideas are appreciated.

> > > > Thank you

> > > >

> > > > le, Mother of Jack 4months with Right Torticollis and

> > > > associated Right Positional Plagiocephaly